Why this Certified Genuine Autistic is unconcerned with your references [cross-posted from elsewhere]

I’m professionally-diagnosed Autistic. Diagnosed twice, actually. I received an Asperger’s diagnosis when I was thirteen, as a result of a “let’s interview you and your family and figure out which boxes we can fit you in” process. I took the ADOS when I was almost 18 and had my diagnosis changed to Autistic Disorder. My ADOS social and communication combined score is 17. The ASD cutoff is 7; the Autistic Disorder cutoff is 10.

But those aren’t the sorts of things that convince me I’m Autistic.

I self-identified when I was almost twelve. My teacher had a copy of the May 2003 edition of Time Magazine in the classroom. Something about the cover image called to me. I would sneak in during lunch to read and re-read the cover story. I don’t remember now what my reaction to it was. I’m leery of ascribing it too much significance. But I know I had spent years secretly reading child development books on my parents’ shelves trying desperately to find what it was that made me wrong. Nothing had quite fit. I doubt this particular piece seemed like it fit exactly; it was a rather terrible article. It piqued my interest, though.

Yahoo!Directories was still a thing back then. (It apparently still is, but isn’t directly accessible from the main page.) I found autistics.org through it and Moggy Mania through that. I started reading discussion groups maintained by Autistic people. These were the things that solidified my identification. Finally, there were people whose experiences of the world seemed to match my own.

But doubt ate away at me. I wasn’t professionally confirmed. Maybe I was just a generic defective failure person grasping at any explanation that presented itself. Maybe it was just anxiety or the result of cystic fibrosis altering my experiences enough that I couldn’t relate to the majority of children my age.

My mom wanted me to see a psychologist anyway. I agreed to do so. I didn’t mention anything about the autism spectrum in the interview process; I had already been shot down by my parents when I had mentioned the possibility before and was too frightened to bring it up again. But I had spent enough time knowing what autism was and considering how my experiences lined up with the criteria that it couldn’t not influence my answers to my evaluators’ questions. I was aware of this.

The psychologist asked if I had ever heard of Asperger’s Disorder. She found my recitation of the DSM-IV criteria startling and gave me a definite diagnosis.

Judging by everything I’ve read, this should have alleviated my doubt. It didn’t, because I gave her information I already knew and she applied it to standards I already knew and therefore I couldn’t see any additional value. The possibility that I was now an evil, manipulative person who managed to con a professional into giving me a diagnosis got stuck in my mind. I had the same response four years later to my ADOS results. I knew what an Autistic person looked like to the tester. How could I be certain that I hadn’t subconsciously altered my behavior to convince her?

So here I am: an Autistic person with appropriate credentials. But I can’t base my identity on those credentials. The information they’re based on is too limited. I can’t possibly have fit the breadth and depth of my life into those evaluations.

What I do have is a book full of “stories” from preschool. In which my teacher would say “Tell me a story about this fish/cat/frog.” And there are pages and pages consisting only of the words “this fish/this cat/this frog.” I have my mother’s account of enrolling me in a roller-skating class at age six and the teacher’s concern over my spending the majority of the class sitting silently in the center of the rink. And my father’s cheerful stories of my memorization of National Geographic captions at age 2.5. The fact that I was only allowed to start kindergarten at six due to claimed social/emotional immaturity. That my elementary education was split between classes with children much older and much younger than me due to wildly disparate skill sets. The memories of my daycare teachers’ and my grandmother’s frustration at my inability to not retch when eating applesauce or unevenly-textured meat. The comment I wrote in my second grade end of year review: that the part of class I liked least was the noise produced by my classmates. Said classmates’ exasperated attempts to get me to stop talking about cheetahs and sea otters.

I have to ground myself in these details, or I’ll tie my mind in knots attempting to convince myself I’m not Autistic, just evil. Because these are all specific things that happened in my life. And they haven’t been twisted around to fit anything. They’re just parts of my life that happen to have massive parallels with parts of other Autistic people’s lives.

There are things in the present too. The feeling of safety at Autreat (“where everybody knows your shape” is the bit of echolalia that keeps floating through my head — I was reading Feet of Clay on the way there). I can compare it to the large numbers of social events I’ve participated in over the past year in which I wasn’t in the neurological majority; almost every conversation I had in those contexts sputtered to a halt within three sentences — if I was even able to participate at all. At Autreat, I still had problems with receptive language processing, but the extent of my participation was far closer to equal. The nature of my social successes as well. I have friends and a romantic partner now. I sometimes worry I might be deemed “recovered” on that basis. But they’re the sorts of people who tend to be magnets for other Autistic people as well, and the contrast in my success with them versus my failure with others is significant.

The patterns of my life remind me who I am. The abstracted assertions of professionals make me forget and deny, even when they’re explicitly written to be about me. I need the grounding of community.

And all this is why I can’t distrust people or condone ejecting them from our spaces purely on the basis that their identity wasn’t handed to them by people with the right letters after their names. Because I’ve been both places, and the value of years of weighing evidence and evaluating where I belong is so much more than that of two-to-three hours of subjective evaluation in which both the information conveyed by the tested and the conclusions drawn by the tester are influenced by pre-existing conclusions on both ends. The former is still what I cling to when in doubt.

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